1. < Neuroendocrine Tumors (NETs)

Should I see a NET specialist?

Posted by Liz @lizzyeastwood, May 17, 2023

In January 2020 I had a distal pancreaectomy to remove a malignant non functioning pancreatic tumor. It was well defined; local lymph nodes clear; ki 67 >2. Every 6 months I receive a pt scan which I discus with my surgeon’s PA. Should I also be consulting with a Net specialist?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Liz | @lizzyeastwood | Jun 16, 2023
In reply to @colleenyoung "Hi Liz, I thought I'd check in with you. Has it been determined that the tumor..." + (show)
@colleenyoung

Hi Liz, I thought I'd check in with you. Has it been determined that the tumor was a neuroendocrine tumor? How are you doing?

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I’m well. Thank you for checking. I just had a scan in Rochester that they said looked “great”. When I read the other posts I get concerned that I’m not doing enough for myself, but I think that is a pretty universal concern with cancer. Not completely related but my husband died of melanoma when my children were young, so I’ve been determined to seek the best care I could find. Mayo has literally been a lifesaver.

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1 reply
Liz | @lizzyeastwood | Jun 16, 2023
In reply to @tomrennie "Have you been diagnosed with a NET by Mayo?" + (show)
@tomrennie

Have you been diagnosed with a NET by Mayo?

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Yes, Pnet neuroendocrine ki 67 > 2 malignant non functioning was the diagnosis after biopsy in Rochester. The tumor was originally a found during a ct scan at another hospital after a routine colonoscopy revealed a large tumor in my sigmoid colon ( which was not a NET.) I had the colon tumor removed and a distal pancreaectomy at Mayo in January of 2020

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 28, 2023
In reply to @lizzyeastwood "Thank you very much for your reply. It has made me anxious that Mayo hasn’t suggested..." + (show)
@lizzyeastwood

Thank you very much for your reply. It has made me anxious that Mayo hasn’t suggested a Net specialist. I will definitely check out LACNETS. Blessing and good luck to you!

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Hi Liz, I thought I'd check in with you. Has it been determined that the tumor was a neuroendocrine tumor? How are you doing?

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1 reply
Zebra | @californiazebra | May 23, 2023

LACNETS is having their annual NETS virtual conference on Saturday 6/17/23 from 8:00-1:00 PT with many NETS specialists speaking. You can register for free at their website LACNETS.org

Specialists from top facilities include medical and surgical oncologists, radiation, interventional radiology, gastroenterologist, etc. They'll discuss terms and concepts, surgery, imaging, treatments, clinical trials, etc.

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Zebra | @californiazebra | May 20, 2023
In reply to @tomrennie "So we want a NET specialist on our care team even if we don't have NETs?..." + (show)
@tomrennie

So we want a NET specialist on our care team even if we don't have NETs? As a Mayo patient, I am all confused.

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Hi @tomrennie

You only need at NETS specialist on your team if you have NETS. 🙂

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Turkey | @tomrennie | May 20, 2023

So we want a NET specialist on our care team even if we don't have NETs? As a Mayo patient, I am all confused.

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2 replies
kim1965 | @kim1965 | May 19, 2023

The answer is hell yes! Sorry for the dramatics, but it is that important to get a NET Specialist that works within a Multi-Disciplinary Team. Please let us know what other questions you may have along the way. We are all here to help each other out. We got this!

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Turkey | @tomrennie | May 18, 2023

Have you been diagnosed with a NET by Mayo?

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1 reply
Liz | @lizzyeastwood | May 17, 2023

Thank you for all of that information. I do not have a nets specialist, so I’m just going to request an appointment with one. I think I just slipped through the cracks.

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